TMAU DIET ADVICE for Lady with TMAU on TV

Note : Video is currently blocked in UK.
UK viewers will need to watch the whole programme here : Food Hospital

TMAU DIET

Our very own very brave, Ellie James, who lives in Bristol, England, did not receive her TMAU diagnosis until after having struggled with TMAU and diet uncertainties for 11 years. Our community embraces Ellie in profound gratitude for having come forward and doing this interview to raise awareness in all levels of society, including the international medical community, sufferers of body odor, and all persons interested in understanding what life is like as a body odor sufferer. Thank you, Ellie, this wonderful Channel 4 programme "The Food Hospital," and the experts in this video for providing such valuable information about nutrition and the dangers of a self-determined and self-imposed restricted diet many body odor sufferers desperately resort to in order to control one’s odor.

Our community embraces Ellie in profound gratitude for having come forward and doing this interview to raise awareness in all levels of society

As body odor sufferers, we have a series of hurtles of seemingly monumental obstacles we must build our strength up to face and overcome. Our first obstacle is to find the courage to get tested, and the second obstacle is to accomplish all the impediments that arise in the process of getting a TMAU test, i.e., physicians not having heard of this test and thus blocking the process. In some countries, it is either very expensive to get tested, or there is no opportunity at all to be tested for TMAU. And there are virtually no tests in existence for other forms of non-illness related systemic body odor conditions.

Whether a sufferer accomplishes getting tested or not, and even if one is “privileged” enough to get answers by being in the 20 to 30 percentile of the people who test positive for TMAU, we join Ellie in believing that our only available resource is to turn to the internet for diet guidance from other sufferers (non-experts). Sadly, we find ourselves entering the realm of seriously limited information, or blatant wrong information from non-experts, about, “how to control this odor condition and still remain healthy.” But unfortunately, MOST sufferers from around the world have no other recourse but this unprofessional guidance. Thank you Ellie for sharing this wealth of this information with all of us! If people like you chose to not share information as you have, we would be in a very hopeless state indeed.

Most body odor sufferers, TMAU positive and TMAU negative, throughout the world do not have the advantage of having at their disposal professional nutritional guidance to be able to determine what diet can control their particular odor while still allowing us to stay healthy. So the international medical community and sufferers alike, turn to the very few experts, such as those seen in this video, for guidance. In Ellie’s case, even after having had a positive diagnosis, she was fortunate enough to eventually receive the nutritional information she desperately needed from these experts to help her develop an effective, healthy diet that allows her to control her odor to a large extent.

This is precisely one of the reasons why MEBO Research came into existence – to become and intrument by which all sufferers, physicians, and nutritionists in all countries in the world may have access to this and other diagnostic tools, treatment options, and to raising awareness so that physicians may also be informed of the limited treatment plan available. We hope that this blog serves this purpose well.

However, even the very compassionate experts seen on this video and a few others around the world have been hoping for years to get large grant funding to be able to further research TMAU and other body odor conditions in order to best help us. This is MEBO's other primary purpose for existing - to assist in every way possible to support these experts in obtaining funds to initiate research into all areas of body odor conditions, treatment, and cure. Scientists in the UK and other countries in the world would love to receive the grants necessary to carry out significant research to study at a deeper scientific level all the causes of body odor conditions, including TMAU, to then be able to develop more effective and permanent treatment for these body odor conditions.

As the program points out, “Hormones, illness and diet can all determine our particular smell.” This means that much more in-depth research needs to be done to understand the true dynamics of hormones, the environment (microbiota), and illnesses in relation to the various body odor and systemic halitosis conditions. But we can't stop there, we also need to research effective treatment options specific to the various causes of body odor conditions.

Again, we thank Ellie for the love she has poured over our whole community of sufferers and their families by stepping up and proactively pursuing the possibility to be part of the solution!

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

International free Skype Conference Calls and Western US Meetup

A member of our community is looking to do meetups in the Seattle region. He is also building a list of Skype MEBO contact from around the globe. If anyone is interested in either or both events, please send me your information.

RE a Skype conference call: If you are concerned about the video capability of a Skype call, please keep in mind that unless you turn on your video camera and click on the "video call" button, no one will be able to see you. In order to join a Skype conference call, you need to download Skype, in order to make Skype-to-Skype calls. It's quick, easy, free, and can be used internationally.

RE having a meetup in the Seattle area: Please send me an email, maria.delatorre@meboresearch.org, and I'll forward it to the person organizing it. We need to bring together our people at every opportunity. Meetups are so uplifting and its impact stays with us throughout the year. Most meetups in the U.S. have been held in the eastern part of the country, and the last one in the west was in LA a few years ago. It's time for another western meetup.

Let's do it!

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

Shop through Amazon and earn MEBO Research money for it's projects and overheads

Click on this banner to start
shopping at Amazon.com!

SHOPPING FOR THE HOLIDAYS?

In the long-term MEBO Research is looking to rely on grants or donations from foundations or benefactors to promote or do research into systemic body odor and halitosis. However, in the early days we are relying on any small donations and any other small ways to keep things ticking over in this early stage, such as funding to pay for the website costs etc (currently paid for by Maria). The volunteers behind MEBO Research do everything for free.

The purchaser does not pay extra to donate to MEBO Research through Amazon - Amazon donates to MEBO directly when you buy online through Amazon.com.

If anyone has any plans to buy through Amazon and would like part of the cost of whatever you are buying to go to MEBO Research (probably about 5% of the product price), you can click through the Amazon link here or through the Amazon link on the MEBO MARKETPLACE link and any goods purchased through those links means MEBO will get about a 5% cut. MEBO does not see the details of your purchase, but can confirm a purchase earned commission.

The purchaser does not pay extra to donate to MEBO Research through Amazon - Amazon donates to MEBO directly when you buy online through Amazon.com. This applies when you click on the icon on this post that takes you to Amazon.com or on the MEBO MARKETPLACE, where you would do your shopping as you normally would - nothing more from you would be needed. That's all you have to do.

You can then do your shopping as you normally would, purchasing anything you like, such as electronics, clothes, toiletries, chlorophyll, or downloads, anything at all from whichever merchant you like, like you normally would. There are no codes involved, or anything else you need to do, but to go shopping to your hearts delight. This Amazon link should take you to your national Amazon website, so anyone worldwide can use it. And it costs the buyer no extra charge. No personal information about the purchases are given to MEBO.

Any benefactors may also contact us anytime to discuss larger donations for research. MEBO Research is a registered Public Charity in the United States.

Happy Thanksgiving everyone!

Translated into Spanish

MEBO Research

Thanksgiving Message: Coming Out of Our Closets to Become Who We Really Are

Today is a special day of the year in which we follow a tradition in the United States of giving thanks to God. Sometimes it is difficult to feel thankful when we are imprisoned inside our "closets;" but if we chose to break out and come out to be who we truly are, and to grow in our journey through life, the freedom to do so impels us to thanksgiving! I hope you enjoy this piece. HAPPY THANKSGIVING!

María

If you keep listening to the love, if you keep receiving the love, trusting the love—even with all your limitations, unworthiness, limited intellect, or whatever you feel holds you back—you start to experience within yourself a sense of possibility. Whatever life is inviting you into, you have this sense that it’s okay and, even better, that you can do it! That is the joy of the saints. Now you don’t have to do it by the world’s criteria of success or performance. As Mother Teresa loved to say, “The only real success is faithfulness.” To be faithful to this inner love is in itself the greatest success. It is of itself the possibility. No outer successes are necessary to be happy.

...It’s not just possibility they experience—but permission. It’s permission to color outside the lines and to be who you really are. It’s not just gay people who have to come out of their closets. We’re all in our closets. They’ve just given us a good metaphor for what we all have to do. We’re all afraid to come out of our various closets. It’s not the need to be outrageous or rebellious. It’s so much better than that. It’s just permission to be that image and likeness of God that you really are. You are unlike any other image or likeness. It is as if God is saying, “I’m expecting you to return to me simply and totally as you really are!”

Richard Rohr,
from Following the Mystics through the Narrow Gate - Seeing God in All Things

MEBO Research

Poll : does regular consumption of citrus juice/fruit make you feel worse ?

Bloodborne body odor/halitosis : Does regular consumption of citrus fruit/juice make you feel more 'toxic' ?

Furanocoumarins in citrus fruits, especially abundant in grapefruit, is known to inhibit some of the cytochrome P450 group of enzymes, which are important for detoxification. Currently it is thought furanocoumarins do not inhibit FMO3 function, which has a similar function in humans as the CYP450 enzymes. Like those who have various FMO3 levels of deficiency due to genetics, the same can happen in CYP450 enzymes. Probably taking citrus fruits regularly coupled with being genetically 'deficient' (to some degree) in the enzymes it inhibits may make a person feel slightly 'toxic'. It is not known if deficiency the CYP450 enzymes would be responsible for any forms of systemic body odor.
wikipedia : the grapefruit juice effect

MEBO Research

raregenomics.org following our twitter account

raregenomics.org following our twitter

We were happy to notice a new follower to our twitter account recently : raregenomics.org. Obviously genetics is of great interest to the systemic body odor and halitosis community, since a genetic weakness seems to be a likely factor in many cases.

Taking a look at the raregenomics.org website, the Rare Genomics Institute 'team' seem to be a highly qualified group of younger individuals who are breaking out of the old slow form of financing and instigating clinical research, and instead using the internet and advances in genetic testing to 'crowdfund' genomic testing into 'rare disorder' cases so that understanding of the genetics of the disorders can take place in a quicker fashion, with the data available to the research community. If you like, a small 'quick response' team (like SWAT) using the internet and genomics testing to have an impact that may have huge ramifications for those disorders.

The 'team' seem to be highly qualified younger people with expertise in genomics, based in top health research centers across the USA such as Yale University and Harvard, with the advisory board looking older and even more qualified (all Professors).

The basic aim seems to be to find children with 'rare disorders' and fundraise their genomic testing costs on the raregenomics website. The testing will be carried out by raregenomics.org and made use to understand the disorders better, in the hope of finding therapies or cures.

systemic body odor/halitosis and raregemoics.org

Read More

Are you helpless / vulnerable OR IN CONTROL?

What can a sufferer expect once he or she determines which odor-management protocol best controls his or her respective odor type?

Having a secure feeling of being in control automatically reduces anxiety and promotes a happier and healthier social life.

Sadly, the answer is to be deprived of eating foods one enjoys! Since odor-management is a lifestyle that pretty much denies the sufferer the pleasure of eating his or her favorite trigger foods, a sufferer will inevitably give in to temptation and may sooner or later eat the "forbidden fruit," especially in special social events.

But, should this person consequently feel guilty? Is this wrong? And if so, why? After all, it's one's own body and the decision whether to eat or not to eat should rest solely on the person involved! In fact, we do need to consume choline and other important nutrients that our odor-management protocol may deprive us of.

These are a few questions each sufferer needs to ask regarding his or her individual body’s reaction to trigger foods:

1. How much of a certain trigger food can I eat before the odor kicks in?
2. How long will it take me to clean a trigger food out of my system?
3. Since cardiovascular exercise speeds up the "cleansing" process with deep breathing and excessive sweating, how much exercise do I need to do and for how long to bring down the odor level?
4. What side effects do I get when I have odor? (physical and/or emotional)? Am I willing to face these side effects after eating a favorite trigger food?
5. What social events will I be attending after eating my favorite trigger foods?

The answers to these questions are as unique as each individual is unique.

HELPLESS AND VULNERABLE OR IN CONTROL?

The important consideration in order to have control is to know which the trigger foods are, what one's saturation level is, and how long it will take to "clean out" one's system after indulging.

The most psychologically disturbing aspect about living with an odor condition is feeling totally out of control and vulnerable to social ostracization because one emits odor. This uncertainty triggers generalized anxiety because of the unpredictability of potential socially embarrassing and emotionally painful events. So what is the opposite of feeling out of control and vulnerable? Being in control when making wise personal decisions! Having a secure feeling of being in control automatically reduces anxiety and promotes a happier and healthier social life.

It's important to understand well which are one's individual trigger foods, as opposed to other sufferers' trigger foods. With this awareness, the sufferer can decide when to break the diet and enjoy his or her favorite food. This way, the sufferer can decide what level of odor is an acceptable consequence and when to consume it. The important consideration in order to have control is to know which the trigger foods are, what one's saturation level is, and how long it will take to "clean out" one's system after indulging. Armed with this knowledge, a sufferer can take charge and make controlled personal decisions based on this understanding from time to time.


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

New video by CaliforniaRollSushi3 about her body odor : You're not alone

16 year old CaliforniaRollSushi3 has posted a new video on her youtube channel. We have mentioned before her videos venting about her body odor, which hopefully bring some comfort to the viewers and her, and decrease the taboo about the subject.

Educating dental practitioners this month NOVEMBER 2011

As she did in March 2011, our very own, Karen James (username Malory), is spearheading yet another campaign to raise awareness in the UK, and this time in the dental practitioner community.

Please e-mail the contacts below with a brief account of your experiences (frustrations at looking for cures etc)

Karen (username malory) has written a post in MEBO's Forum (quoted below) asking us to join her in this venture this month of November. Let us show Karen the same support we gave her with her campaign in March. It was most successful with questions for research posted by the medical authorities in the UK Library of NHS Evidence website of the National Institute for Health and Clinical Excellence (NICE), UK Database of Uncertainties about the Effects of Treatments (UK DUETs).

Karen James tells us:

We know that many sufferers of systemic odour conditions have bloodbourne halitosis and/or TMAU. We need to keep raising awareness among others. It would be a good idea to target dental organisations to raise awareness of these conditions so that people can be directed to the support networks they need and not waste time and money going to ‘specialists’ who claim they can cure halitosis.

Please e-mail the contacts below with a brief account of your experiences (frustrations at looking for cures etc) and perhaps paste in the MEBO Research international petition link also so that the extent of the problem can be appreciated by the recipient.

It would be great to make this an international effort and I would happily e-mail/contact any contacts in the US, Australia or anywhere else which others may provide.

enquiries@bda.org (British Dental Association)
allan.reid@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk (Faculty of General Dental Practice)
editor@badn.org.uk (British Association of Dental Nurses)
online form to be submitted at http://www.General Dental Council
online form to be submitted at http://www.British Dental Health Foundation
online form to be submitted at http://www.NHS Choices
online form to be submitted at http://www.British Association of Dental Therapists

The link below is a petition created by the registered charity MEBO Research which can be signed online to help raise awareness of the condition internationally.
http://www.meboresearch.org/petition.html

If you are uncertain about what to write and would like to discuss it before submitting your testimonial, please do so in the thread Karen started in MEBO's Forum, or send Karen or me a rough draft for us to look at first, please feel free to email it to us, and we'll get back to you.

THANK YOU FOR YOUR UNWAVERING SUPPORT!
WE KNOW WE CAN COUNT ON YOU,
OUR WHOLE INTERNATIONAL COMMUNITY
DEPENDS ON EACH ONE TO WRITE!
We don't have to be UK citizens to write our testimonials,
All are welcome and each one will carry a very important message.

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

Nasal Halitosis Treatment

As mentioned frequently in the forums, many sufferers of chronic halitosis claim that their odor not only comes from their mouth, but also from their nasal breath. The odor can be detected by others from the air only coming out of the sufferer's nose when breathing with his or her mouths closed. Some sufferers have already gone to see an Ear, Nose, and Throat specialist (ENT, or Otolaryngologist), and were told that they have no infection, and possibly some have been told that they suffer from allergies with excess nasal secretions.

The odor can be detected by others from the air only coming out of the sufferer's nose when breathing with his or her mouths closed.

In the same way that trimethylamine (TMA) gives off body odor/halitosis "that results from excess excretion of trimethylamine in the urine, breath, sweat, and reproductive fluids," as noted in GeneReviews - NCBI Bookshelf of the U.S. National Library of Medicine, NIH, the same can be said of any other volatile organic compound (VOC), possibly resulting from another metabolic deficiency, excreted by the body in its bodily fluids and mucous membranes. Our bodies try to excrete VOCs through our cleansing organs, including the oral and nasal mucous membrane as well as in saliva.

Sufferers of nasal halitosis are encouraged to discuss with their doctor the possible treatment option with a NasoNeb Nasal Nebulizer. Your doctor would be the best judge which medication to use with your NasoNeb, and possibly simply a deep cleansing with saline solution may help. If a sufferer is lucky enough to find a sympathetic doctor, such as an ENT or an allergy and asthma specialist willing to prescribe a NasoNeb, even if just to use with saline solution, that might be beneficial. It is very doubtful that any doctor would prescribe antibiotics or antifungal meds without first establishing that there is indeed an infection.

SOME MEDICATIONS USED WITH NASONEB:

1. 0.9% Sodium Chloride Solution, USP (Sterile, Non-Pyrogenic)
2. Betamethasone (Brand name: Celestone Soluspan) - a synthetic glucocorticoid used as an anti-inflammatory to help reduce swelling within the sinuses and nasal passages, redness and allergic reactions. It is used for treating severe asthma, severe allergies, rheumatoid arthritis, ulcerative colitis, certain blood disorders, lupus, MS, and certain eye and skin conditions.
3. Levofloxacin (Brand name: Levaquin) - an antibacterial in the fluoroquinoione class of antibiotics. Indications for its use are treatment for sinusitis caused by susceptible bacteria, including: Streptococcus pneumoniae, Haemophilus influenza, or Moraxella catarrhalis.
4. Mometasone (Brand name: Nasonex) - a synthetic nonfluorinated corticosteroid used as an anti-inflammatory, helps reduce swelling, redness and allergic reactions within the sinuses and nasal passages.
5. itraconazole (Brand name: Sporanox) - antifungal infections that begin in the lungs and can spread through the body. "Itraconazole oral solution is used to treat yeast infections of the mouth and throat and suspected fungal infections in patients with fever and certain other signs of infection. Itraconzale is in a class of antifungals called trazoles, which works by slowing the growth of fungi that cause infection."
6. clarithromycin (Brand name: Biaxin) - antibiotics used to treat certain infections caused by bacteria, such as pneumonia (a lung infection), bronchitis (infection of the tubes leading to the lungs), and infections of the ears, sinuses, skin, and throat.
7. clindamycin (Brand name: Cleocin) - a lincosamide antibiotic used to treat certain types of bacterial infections, including infections of the lungs, skin, blood, female reproductive organs, and internal organs.
8. ceftriaxone (Brand names: Rocephin, Rocephin IM Convenience Kit (obsolete), Rocephin ADD-Vantage) - is a cephalosporin antibiotic that is effective against gram-positive and gram negative bacteria.It is used to "treat many kinds of bacterial infections, including severe or life-threatening forms such as meningitis."

Read More

Daily Mail article on body odor and other odor problems today

Daily Mail Body Odor Halitosis article 

The popular UK newspaper that has an accompanying website that has become popular worldwide, The Daily Mail, today has an article on the different forms of odor problems people are likely to have.


Daily Mail article on the causes of body odor, halitosis, gas, and smelly feet

Unfortunately there is no sign of systemic/bloodborne/metabolic body odors and/or halitosis, listing only about the surface/localized types of body odor/halitosis. Each part of the article involves information from an 'expert'. Probably the only one that may be relevant to and influence future awareness of systemic odors might be the advisor for the halitosis article ; Dr Nigel Carter of the British & International Dental Health Foundation. We are having difficulty locating his email address.

The day that such a 'filler' article includes systemic body odors/halitosis, we know that the general public have a good chance of generally being aware of these forms of odor problems, which may turn out to be a substantial subset of the body odor/halitosis community, if not the majority.

Homeworking agency : peopleperhour.com

homeworking site

Many people with odor issues would like the opportunity to work from home, so MEBO is always looking for leads in this area of employment or income. An interesting new employment agency is peopleperhour.com, where employers offer small projects on a freelance basis (most can be done via the internet, presumably) and anyone interested can apply for the project. We post it here to make you aware of it. It is not a recommendation.


Anyone with successful stories of homeworking are free to contact us to inform the community of how they may make a living from homeworking.

Below is a post from yahoo answers that has a list of a 'top 7' list of online 'remote outsourcing' agencies. We cannot vouch for the information or websites listed.

Read More

TMAU to feature on new UK TV medical show on 29 November

TMAU on Food Hospital 29 Nov

Trimethylaminuria is to feature as part of a new medical series on the UK TV 'Channel 4' called 'Food Hospital' on November 29. A volunteer ('Ellie' from the tmau.org.co.uk forum) will be given diet advice for the 'TMAU diet' (mostly low-choline, avoid TMAO-rich fish, possibly carnitine (depending on who is advising) and anything that may inhibit the enzyme). Presumably the TMAU case will be about 10 minutes long

TMAU diet advice to be given on UKTV
Food Hospital
Channel 4
Tuesday 29 November

What's that fatty odor?

Olfactics and Olfactory Diagnostics

Aurametrix on Facebook

Smell is the Cinderella of senses, but could you imagine losing it?
This blog, [Olfactics and Olfactory Diagnostics] is about the sense of smell, olfactory properties of chemicals, and uses of volatile emissions for medical diagnostics

by Dr. Irene Gabashvili,
Scientific Advisor
MEBO Research

Body odor is closely associated with diet. Deciphering the chemistry of human odor is not an easy task - only about 5% of odorous molecules are usually recovered from collection containers, and not all of the molecules are identified in complex spectra. Volatile fatty acids, alcohols, and aromatic ring compounds comprise a substantial fraction of smelly molecules, yet very little is known about the origin and factors controlling their production in humans. Fortunately for some (and not so fortunately for others), the human nose can capture and discriminate many smell signatures. Could this discrimination be used to connect the dots between diet and body odor? MEBO Research has just started an anonymous study using the Aurametrix health analysis tool to find out.

these preliminary results show that together we may find the answers to many health-related questions. With more participants, we'll soon connect the dots between diet and body odor

Aurametrix's knowledge base provides a wide selection of foods and symptoms, including different types of odors recognizable by the human nose. Participants in the study have been recording some of their food intake and activities on days when their symptoms are better or worse than average, entering items they suspect might be contributing to or alleviating their body odor on those days. The tool's analysis engine then lets them explore all the possible cause-effect relationships. In addition, Aurametrix performs automated analyses across the entire user community and displays cumulative results as "aggregate correlations." The figure on the right is an excerpt from these results.

Although the study has only just begun, the preliminary results already look very interesting. One example is fatty odor. Aurametrix linked several dietary chemicals to unpleasant "fatty odor" emanating from skin based on Aura entries of several participants. The top chemicals so far are: Vitamin K1 (phylloquinone), Octadecanoic acid, FODMAPs, Beta-carotene, Carbohydrates and Monosaccharides. Another interesting result (although there were fewer observations) is that Vitamin B12 obtained from diet seemed to help prevent fatty body odor.

• Could Vitamin K1 really contribute to "fatty" odor? Could 6 observations derived from different users' Auras be just a coincidence? Vitamin K is proposed to increase production of alkaline phosphatase in intestines. This enzyme produces a number of different substances, some of which have a peculiar sweetish smell. Chlorophyll, usually recommended to combat body odor and supposedly makes odor "sweeter," is an excellent source of vitamin K1. And so is Asparagus that gives urine a disagreeable odor.
• Octadecanoic (Stearic) acid was also linked to fatty odor in 6 observations. This saturated fatty acid is most abundant in animal fats and cocoa butter, and also in nuts and seeds (peanuts, flax), cheese, cookies and candies. Its smell is fairly mild, yet can be detected by the human nose (Bolton and Halpern, 2010). Besides, it slowly converts in the liver to heart-healthy oleic acid which has a faintly fatty odor with a hint of dead insects. It could also metabolize into other compounds and incorporate into liver lipids or follow alternative routes.
• FODMAPs, highly fermentable but poorly absorbed short-chain carbohydrates and polyols, were found to be an important dietary factor contributing to gastrointestinal symptoms. Perhaps FODMAPs, carbohydrates and monosacharides in particular could also contribute to odor in the absence of GI discomfort?
• Beta-carotene is another heart-healthy chemical with anticancerous properties important in human nutrition as a source of Vitamin A. Tobacco, tea, many spices and flowers owe their flavors to chemicals metabolized from beta-carotene. One of such chemicals is warm and woody beta-Ionone that smells of blackberry at lower concentrations and fatty-cheesy at higher concentrations.

The chemistry of odors and their origins is undoubtedly very complex. Yet, these preliminary results show that together we may find the answers to many health-related questions. With more participants, we'll soon connect the dots between diet and body odor. Want to participate? Write to:

aurametrix.mebo@meboresearch.org

.

References

Bolton B, & Halpern BP (2010). Orthonasal and retronasal but not oral-cavity-only discrimination of vapor-phase fatty acids. Chemical senses, 35 (3), 229-38 PMID: 20100787

Dunkel M, Schmidt U, Struck S, Berger L, Gruening B, Hossbach J, Jaeger IS, Effmert U, Piechulla B, Eriksson R, Knudsen J, & Preissner R (2009). SuperScent--a database of flavors and scents. Nucleic acids research, 37 (Database issue) PMID: 18931377

---

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org

winner of NORD Trimethylaminuria research grant to be announced soon

NORD TMAU Fund info

According to the NORD website, the announcement as to who won the Trimethylaminuria research grant of ~$30,000 is scheduled to be made in mid November, so should be announced in the next week or so. The money for the fund was mostly raised by the odor community in a campaign led by Cheryl Marshall, which goes to show what the community is capable of. Apparently a number of proposals were put in for the grant. We will keep you updated.

Update : Announcement is now expected around last week November/ early December

TEN Body Odor Questions on "Nutritional metabolic and endocrine disorders > TMAU" published in UK NHS Database

BREAKING NEWS : On October 21, 2011, ten (10) body odor related uncertainties / questions have been published in the October report to the UK National Institutes for Health Research (NIHR) Database, under the category of ‘Nutritional metabolic and endocrine disorders > Trimethylaminuria’(see left column).

The benefit of the publication of these questions...is that they have been identified and made explicit by the authorities in an attempt to address and “prioritise new research” of the questions/uncertainties published.

These questions can be seen in the Library of NHS UK, Database of Uncertainties about the Effects of Treatments (UK DUETs).

Six (6) of these listed uncertainties have referenced their source to MEBO Research (see, "View Details of each question"), and four (4) of them reference the source to the DUETs Editorial Team.

The benefit of this publication by the Special Health Authority established by order of the Secretary of State for Health, is that these questions have been identified and made explicit by the authorities in an attempt to address and “prioritise new research” of the questions/uncertainties published. With this validation, it is hoped that research grants would be more readily obtained from government and private sources to study these uncertainties.


The following questions are the nine (9) uncertainties 'From patients' and one (1) 'From professionals' published in this NHS Evidence website of the National Institute for Health and Clinical Excellence (NICE).

From Professionals: (Click on 'View Details') Is there a bacteria responsible for producing trimethylamine (TMA) in the gut?

From Patients: (Click on 'View Details' of each question)

1. Do high plasma levels of trimethylamine (TMAO) gut flora metabolism of phosphatidylcholine cause cardiovascular disease?
2. In-vitro screening to test whether ataluren (PTC124) can correct functional consequences of premature termination mutations of the Flavin containing monooxygenase 3 (FMO3) gene?
3. To what extent are individuals with trimethylaminuria, and lack functional hepatic flavin containing monooxygenase 3 (FMO3) substrates, unable to oxidize other odiferous FMO3-specific substrates and does this contribute significantly to body odour?
4. Which bacterial species in the human intestine are responsible for the generation of trimethylamine?
5. Would a comprehensive biochemical screening test for trimethylaminuria help patients?
6. Do probiotics significantly reduce trimethylaminuria (TMAU1) producing bacteria in the human intestine and does this result in clinically relevant decreases in TMA production, and thus body odour, in patients with TMAU1?
7. Enzyme replacement therapy for trimethylaminuria (odour problems)
8. How effective are antibiotics for trimethylaminuria?
9. How effective is a choline elimination diet for treating trimethylaminuria?

HOW DID THIS COME ABOUT? On March 2011, our very own, Karen James, launched a campaign, and using her own words in a post she wrote for this blog, “…to contact the main British medical organisations and health politicians and appeal to their humanity through persuasive letters, e-mails, and follow-up phone calls.” Sufferers from not only the UK, but from other countries, joined in and sent their emails/mails on targeted dates set up by Karen to present testimonials to these authorities. Eventually, Karen put me in contact with Mark Fenton, UK Database of Uncertainties about the Effects of Treatments (UK DUETs), Project Manager, NHS Evidence, National Institute for Health and Clinical Excellence.

By July 2011, Karen was already raising awareness on a high-profile TV show in an 8-minute interview, as the wheels in the British General Medical Council (GMC) and other agencies were turning; and eventually, she was referred to Mark Fenton, Project Manager of UK DUETs. She and I began to work with Mark with the help of an expert in FMO3 in the UK to create a list of questions or uncertainties to be published in the UK National Institute for Health and Clinical Excellence (NICE), DUETs. Researchers are welcome to make reference to these question if they wish to apply for government or private research grants to them.

Our most sincere gratitude goes to Karen James for having initiated and followed through on this endeavor. Without her taking these measures, this would never have come to fruition. This is a perfect example of how one person can make a difference.

HISTORY OF SUFFERERS’ EFFORTS TO RAISE AWARENESS:

Since as far back as the early to mid 1990s, when a woman told her story in a British documentary about her bromhidrosis and hyperhidrosis, and in 1999, when Alice Mata wrote her book, When Bathing is Not Enough, sufferers have attempted bear testimonials to tell the world of the tribulations a sufferer of body odor encounters on a daily basis in hopes of raising awareness and thus initiating change. Other sufferers have told their stories in books such as, Shattered, The Foul Body Odor that Almost Killed Me, and an Anthology, OUR JOURNEY: OVERCOMING THE STIGMA OF THE INVISIBLE MONSTER, and in televised programs and YouTube videos, such as those referenced in this blog under keyword, Testimonial/Evidence.

Other aspects of our international community’s efforts to raise awareness involves email/mail campaigns to targeted government agencies and the medical community. These projects have included the Raising Awareness in the Mental Health Community regarding the Olfactory Reference Syndrome (ORS) diagnosis, and MEBO's Technical Consultant designing flyers to be printed by sufferers throughout the world and left at strategic places, like libraries, schools, doctor’s office, hospitals, etc. Each and every sufferer is encouraged to attempt to communicate with his or her physician by providing the physician with published literature on body odor conditions. These are only some ways to raise awareness of Body Odor Conditions in the medical community, and sufferers are encouraged to "think outside the box" to come up with many more.

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

MEBO Research

Update : TMAU Test Program with the Cleveland Clinic

MEBO Research's priority aim is to set up a Trimethylaminuria phenotype (urine) testing service that is available directly to all sufferers throughout the world, particularly to those who would otherwise never have an opportunity to test. We recently posted about collaboration with a laboratory in the Cleveland Clinic who has kindly offered to supply us with such a service. After a great deal of preparation and testing process, the first set of results were expected to be provided to MEBO at this time, but unfortunately there has been an unexpected problem with the sample being damaged in the handling and shipping process. The TMA-oxide and creatinine levels are within levels typically expected, but the TMA levels are 10-fold less in both, the 20 control samples (of non-sufferers) and the 30 sufferers’ samples, than even typical normal samples. Subsequent samples taken from staff in the lab has given the expected typical normal results, meaning the analytical mass spectrometry assay of TMA and TMAO are accurate and valid.

We therefore are confident that our mass spectrometry assay of TMA and TMAO are accurate, and there is a problem in the shipped samples.

The physician in charge of this testing program, Stanley L. Hazen, M.D., Ph.D. , Vice Chair, Translational Research, Lerner Research Institute; Section Head, Preventive Cardiology & Rehabilitation; Director, Center for Cardiovascular Diagnostics & Prevention has written a communication piece noted below explaining that the mass spectrometry assay is accurate and that he suspects the problem in the shipped samples lies in the vial type used.

Those who sent samples have already been notified this news in a group email and can be refunded if they wish. Anyone new who wishes to register an interest in future testing, you could send an email to be put on the non-committal waiting list to tmautest@meboresearch.org

Message from Dr Hazen

I am writing in follow-up to our phone discussion this morning.
Review of results from samples you recently shipped shows values that are too low (10-fold) for TMA, including in the “normal” samples.
This tells us there is something wrong with either the samples, or the assay.
Parallel analyses of normal control subject samples collected here shows appropriate TMA levels.

We therefore are confident that our mass spectrometry assay of TMA and TMAO are accurate, and there is a problem in the shipped samples.

We suspect that the problem in the shipped samples lies in the vial type used. It must not have been gas tight and allowed for TMA to evaporate from the sample (it is a gas at room temperature).

We therefore will work on finding a more appropriate vial type and sample handling procedure to ensure that the samples collected are stable to the shipping conditions, and the results are valid. Even after identifying the optimal vial type, I recommend that we perform prolonged stability studies to simulate the conditions that would exist with patient samples (up to 30 d between sample collection and analysis).

We therefore regret that it will take at least until Q1 of 2012 before we will be able to proceed with analyses.

Once we identify suitable sample handling/storage conditions (and vial type), we will provide the information so that new collection kits can be prepared.

We are committed to working with your group and will do our best to resolve this temporary hurdle.

Best
Stan

Stanley L. Hazen, M.D., Ph.D.
Vice Chair, Translational Research,
Lerner Research Institute;
Section Head, Preventive Cardiology; Rehabilitation;
Director, Center for Cardiovascular Diagnostics & Prevention
Cleveland Clinic | 9500 Euclid Ave., NE-10 | Cleveland, OH 44195

As stated in a previous post in this blog, Dr. Hazen says that his research is looking at ways of eliminating or suppressing the production of TMA in the gut, as their data suggests this could possibly help decrease cardiac risks. Coincidentally, this may effectively abolish TMAU, although it does not address genetic FMO3 deficiency. When asked how soon clinical studies might begin - Dr. Hazen tells MEBO Research,

While small pilot studies in humans are already under way, - we are still years away from a potential therapy.

This post was authorized by Dr. Hazen.

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María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition